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I wonder if there’s possibility of using something along the lines of https://www.opensafely.org/ ? Although you wouldn’t be able to make changes to update records there may be a way to analyse the data to get a better idea of numbers

Have another hot cross bun and an extra large glass of lemonade? Well it’s all wonderfully confusing and interesting.

Caught up and reached the talk of afferent nerves, another new thing to learn about! Something going on with receptors or nerve fibres responsible for carrying sensory information towards the central nervous system (including light, sound, heat, smell, taste, etc) is very appealing to me. And...

Yes, companies routinely use LLMs and other AI/ML and data privacy is maintained. It’s not a technical problem but a policy and public perception one. I don’t think it need be a privacy issue but because of the lack of trust there would be a privacy issue, if that makes sense? Getting reliable...

ORCHESTRA Delphi consensus: diagnostic and therapeutic management of Post-COVID-19 condition in vulnerable populations Elisa Gentilotti, Lorenzo Maria Canziani, Maria Giulia Caponcello, Anna Maria Azzini, Alessia Savoldi, Pasquale De Nardo, Zaira R. Palacios-Baena, Beatrice Tazza, Natascia...

Yes, I very much saw my role as a librarian rather than an author here, I don’t have the knowledge for much else! Cutting and pasting useful snippets and organising them in one place to be easily referred to. Some key terms, acronyms and definitions or concepts which can be built up over time...

To me the predicable and reliable energy reservoir theory doesn’t explain a lot of my experiences. But I really like the way @jnmaciuch is thinking about things and enjoy watching the process and the discussion. Energy seems more like a symptom than a causal thing to me these days. I’ve...

Thanks @Jonathan Edwards that’s useful. They definitely confuse me! And I suspect many others, so we may just get a lot more confusion rather than much useful information.

I was thinking of doing a members survey on neuropathy but have no idea on how to phrase it or if it would be worthwhile. I know I have some sensory neuropathy, early in my illness a doc did a test where he moved my big toes and I could’t feel him doing so. And I do have odd loss of sensation...

I’m still getting through the longer posts, great discussions! But to add to my thought last night: A signalling issue between the nervous and immune systems feels a lot more satisfying to me. Happy to expand on why if people think it’s useful. It’s not particularly scientific to say it feels...

I like the signalling idea for a few reasons. It makes sense to me in terms of my experience. But one attraction, I think a signalling issue would massively change perceptions of ME/CFS. It wouldn’t be that ‘feeling tired’ illness anymore.

I’m happy to give a bit of curation/library management a go. I have been looking for a way to contribute that isn’t load bearing and I can dip in and out of and this could work.

Thanks Andy.

That’s my understanding. It’s not a replication but looking for genetic correlations between ME/CFS and other diseases. They’re saying “okay here are our identified 115 genes, do these pop up for other diseases too”. However if the genes are relevant and the people in the (Leeds) UK Biobank...

Will the underlying dataset from DecodeME have rare variants and other data used here? Or is that not coming until SequenceME? Presumably if it is present replication would be fairly straightforward with access to the model (a shame it hasn’t been made available)? Or even a wider attempt to...

Physical Therapy Management of Postural Orthostatic Tachycardia Syndrome Using a Pacing-Forward Clinical Approach: A Case Report Powers CD, Miranda NA, Davenport TE Abstract Objective: Postural Orthostatic Tachycardia Syndrome (POTS) is a form of autonomic dysfunction that affects hemodynamic...

That’s key for me. And how the service is run and interacts with patients is as critical to this as what medical advice they give.

I think this is a great idea @jnmaciuch. We do ask all sorts in threads but some of these fundamental questions sometimes do feel like they don’t easily fit. Or you may feel silly asking or don’t want to derail things too much. I’ve found myself going off into other resources and going down...

Recommended by Hutan Ubiquitin proteasome pathway

Recommended by @jnmaciuch https://aklectures.com/ and their YouTube channel https://m.youtube.com/@AKLECTURES Immune system playlist https://m.youtube.com/playlist?list=PL9jo2wQj1WCNaYmBK_B81PlrX4OYLwb13